- 12/05/00 01:19:07

Comments:

Marci - 12/02/00 05:26:34 My Email:rnbuck910@aol.com Your Illness: loin pain hematuria syndrome

Comments: I am a 27 y.o. female who was diagnosed with loin pain hematuria syndrome about a year ago. It took a year of severe right-sided nephralgic pain, several invasive procedures, and a great deal of frustration for this disorder to be diagnosed by my nephrolo ist. Unfortunately, this rare disease also shortened my career as a Navy nurse. Would be interested in networking with others with this disease, health care professionals dealing with this disease, etc.

Marci - 12/02/00 05:26:05 My Email:rnbuck910@aol.com Your Illness: loin pain hematuria syndrome

Comments: I am a 27 y.o. female who was diagnosed with loin pain hematuria syndrome about a year ago. It took a year of severe right-sided nephralgic pain, several invasive procedures, and a great deal of frustration for this disorder to be diagnosed by my nephrolo ist. Unfortunately, this rare disease also shortened my career as a Navy nurse. Would be interested in networking with others with this disease, health care professionals dealing with this disease, etc.

Billy - 11/30/00 03:32:34 My Email:Coteauclan@aol.com Your Illness: LPHS

Comments: Looking for any info, diagnose in 1993,male,would like a reply on others males with this condition. THANK YOU

Lynette - 11/29/00 17:26:04 My Email:buckeyefumi@webtv.net Your Illness: Loin Pain Hematuria Syndrome

Comments: I am 31 years old and was diagnosed with LPHS 3 months ago. I would enjoy talking to anyone who suffers from this rare disease too. Please email anytime.

MaryAnn - 11/29/00 13:59:37 My Email:mayungfer@home.com Your Illness: hematuria

Comments: How do you know if Hematuria is normal or if you have this Loin Pain Hematuria Syndrome? I've had and IVP, CT scan, cystoscopy and urinalysis. All are normal except the urinalysis showing blood in the urine every time. I do have loin pain and sometimes feel nauseated. This has been going on for six months now. Something just doesn't feel right. What do I do now?

MaryAnn - 11/29/00 13:59:26 My Email:mayungfer@home.com Your Illness: hematuria

Comments: How do you know if Hematuria is normal or if you have this Loin Pain Hematuria Syndrome? I've had and IVP, CT scan, cystoscopy and urinalysis. All are normal except the urinalysis showing blood in the urine every time. I do have loin pain and sometimes feel nauseated. This has been going on for six months now. Something just doesn't feel right. What do I do now?

Cynthia Olsen - 06/02/00 15:33:12 My Email:lasycyn@aol.com Your Illness: LPHS

Comments: Does anyone with LPHS having trouble with jopint pain. I would like to talk with you. Is it from the LPHS? Please contact me, I will write back. I need to talk to someone in the same boat as I am in! Many Thanks!

Cynthia Olsen - 04/12/00 04:28:20 My Email:lasycyn@aol.com Your Illness: loin pain hematuria syndrome

Comments: I have had LPHS for over 12 years, however diagnosised about 7 years ago. I went thru an autotransplant of left kidney, 1 yr later, was removed, Pain start on right side about 6 mos later. I recently had a morphine pump put in. This has worked for me, but when I have a infection or I overdo it, I still have to take oral morphine pills. Does anyone with a pump can tell me if they have breakthru pain. Or if you don't have a pump, does overworking (simple things like housework, etc.)cause alot of pain & does ain level goes up along with amount of blood in the urine. How about fatigue? Numb hands? Muscle joint pain/stiffness? Please contact me, I crave to talk to someone with this disease. and NO I'M NOT CRAZY LIKE SOME DOCS THOUGHT!!! Proved them wrong and fo nd a GREAT doc & pain mngt clinic at Loyola Hospital.

- 04/10/00 17:07:22 My URL:http://www.donna.saunders@cna.com My Email:donna.saunders@cna.com

Comments:

FAITH133 - 03/12/00 03:51:39 My Email:H MATHEWS356! Your Illness: LOIN PAIN HEMATURIA SYNDROME

Comments: Hi I am a 18 year old girl and I have been told that I have LPHS. I am currently in the process of confirming this diagnosis. I am very discouraged. This has been going on for 8 years and I am very tired and frustrated. On top of all this I have been dia nosed with Fibromyalgia as a direct result of chronic infection and pain. The doctors are pretty positive that I have Chronic Pyelonepheritis. I wish more than anything that there was a LPHS support group. I go to a Chronic Pain Support Group on line bu have no one who has what I have to turn to. My mom is very supportive of me. With this disease you need all the support you can get. Bottom line ,dont let anyone call you crazy. I am a level headed,A,B,honor role student,who to has dreams. Unfortunately in the last 8 years I have had to put many of those dreams on hold because of this disease. Some days I look in the mirror and it makes me sad how much this has changed me. I insist to my doctors that a person cant hurt this bad and something aweful not be wrong. And it is not just the pain it is the hematuria,nausea and vomitting,low grade fevers,muscle aches, etc that make life miserable. I continue to fight and I wont let this beat me. I am the first to admit that some days I feel overwhelmed and so ry for myself. I cant imagine living the rest of my life this way,but I always come back and pick myself up. It is never easy. My good days would be a healthy persons bad days. It is so hard to understand .You cant give up hope. God has blessed my life ith such great people who love me and support me. I volunteer at the hospital in my area and I see people so much worse off than me. It is very hard to believe that things could get worse when I feel so bad. I feel like I am dying,like I will never be he same. Then I have to realize that I cant just lay down and die. I go to school full time,by the grace of god I usually make it every day. It has not been easy.High School is hard enough,and then to have to deal with excruciating pain,is just cruel. I ent many years without adequate pain relief. I go to a pain clinic in my area and am currently on Methadone and Oxy-IR and a whole load of other medications. As much as I hate the way they make me feel (sleepy,out of it,nauseated etc.)they have inabled me to continue in high school. Each day is a battle to stay awake and not doz off but the alternative is to be in a hospital on a morphine pump. There are no easy answers. Just dont give up. I know you have heard it all from doctors and people that dont understand or have a clue as to what it is like to live like this,but dont let them pull you down,you have enough to deal with.Above all do t give up hope. Thanks, FAITH133

Donna Saunders - 02/21/00 15:47:00 My Email:donna.saunders@cna.com Your Illness: LPHS & Basement Membrane Thinning Disease

Comments: After many tests & misdiagnoses my 15 year old daughter was diagnosed with LPHS. It is my understanding that LPHS is defined as "sever pain in the back and grossly bloody urine". In as much as I hate the fact that she is constantly in pain I can't help ut worry about why exactly her kidneys are bleeding. I have a hard time trying to understand why all the doctors she is, and has been seeing have no concern with what is causing the deterioration of the tissue in her kidneys. Something is not right and feel that not only are we challenged with how to relieve the pain that she is enduring, but how to stop the deterioration and the bleeding. Kidneys should not bleed. Mine don't and her's shouldn't either. Amanda has also been diagnosed with Basement M mbrane Thinning Disease, which I can only believe is exactly that - thinning of the membrane of her kidneys. What, I have to ask is causing that???? Perhaps we'll never know however, it seems to me that doing something to rebuild or rejuvenate the tissu and the membrane would make a whole lot of sense. After much research into dietary supplements Amanda's Grandfather and I believe that we have found a combination of supplements that we believe would relieve her pain as well as aid in the rebuilding of he tissue and the membrane of her kidneys when combined with vitmin C. At this point Amanda's father won't allow her to take these harmless yet what we believe would be effective supplements - mostly due to his own ignorance. Last week I sent informati n on these supplements to Amanda's doctor and asked that he share the information with the doctors we have seen at the Mayo Clinic. I asked that he let me know their thoughts. Once I hear back I would be more than willing to share the information with y u. You can E-Mail me if you like.

Neal Young - 02/15/00 23:42:23 My Email:DisRetUSN@aol.com Your Illness: Idiopathic Adult Onset Communicating Hydrocephalus

Comments: I have Idiopathic Adult Onset Communicating Hydrocephalus. It took Navy doctors about 4 years to diagnois. I have many Neurological problems due to it. I have had 12 brain surgeries in 4 years. Anyone wishing to talk concerning this or other things please contact me at my e-mail a

- 02/10/00 03:34:07

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Paul A.Stringer - 02/08/00 03:29:34 My Email:pastringer@hotmail.com Your Illness: L.P.H.S and poss.Interstitial Cystitis

Comments: Im from Vancouver,Canada.In 1982 symtoms first appeard,pain and gross hematuria I was fourteen. I went through hell,miss diagnoses,mental illness, asked "do I stick pins in my penis" just after a cystoscopy discoverd blood comming from both kidneys.In 1989 I heard of Proffesor Shiel in Australia.Did surgury,OK til 96 bladder pain and testicular pain.Poss.interstitial cystitis.can you help or can I give more info. yours truly Paul A.Stringer

Nicole - 02/06/00 06:56:55 My Email:MonkeyPain@hotmail.com Your Illness: Loin Pain Hematuria Syndrome

Comments: Hi, my name is Nicole. I am 19 years old and was recently diagnosed with LPHS (about 1.5 yrs ago). It took my doctors 5 years to diagnose me. They all thought I was crazy. I have been to many doctors and still seem to get only little relief. I tend t keep myself occupied to keep my mind off it. I work 57 hours a week plus I go to college full time. I don't have much time to think about my pain, but that is not enough anymore. If anyone has any suggestions, please write me. I would appreciate it a lot. I also have carpal tunnel, fibromyalgia, tendonitis, bursitis, and my knee is starting to bother me. I take one day at a time, and think positive. =)

Mary Brennan - 01/23/00 15:35:02 My Email:bcantwell@esatclear.ie Your Illness: loin pain with hematuria

Comments: Hello, I would like to network with others who have this illness I'm living in Ireland I don't have e-mail myself butI can be contacted at the above addy. I suffer from LPHS with Autotransplant of Left kidney, successful but with diminished function in transplanted kidney. Had occassional pain in right kidney prior to transplant for nearly two years. Have now developed right LPHS also am prone to high bloo pressure and UTI's. I have thin membrane deisese, renal angiogram revealed blocked blood vessels with clots and truncated blood vessels. Anyone have any thoughts on setting up a web site devoted to loin pain with hematuria with maybe a chat room and resource centre and appropriate links, I would love to hear from others who would be interested in networking on this topic including people f rm the medical profession. Please contact me through the e-mail address above. thanks........Mary

Jori - 01/15/00 00:31:26 My Email:REDDVL31@CS.COM Your Illness: loin pain hematuria synd.

Comments: Just got diagnosed with LPHS from Mayo. I am 26/female. Any information would be appreciated.

kim robertson - 12/29/99 02:27:11 My Email:krobertson@sprint.ca Your Illness: loin haematuria pain

Comments: I have recently been diagnosed with this very painful rare disease.. I had never heard of it before, I am in alot of pain and they have me on demerol injections. I'm still working and will continue to do so until I'm told I can't anymore. I am a fighter nd won't let this disease beat me. The doctor's say that I will have to have surgery possibly renal transplantation or the removal of my right kidney. They said my next step for pain relief will be to install a pump that will administer morphine. I f anyone one has any additional information I would love to hear from you. I was pleased to find out that there is a support group and I'm not the only one . Thank you Kimberly robertson

Jackie/Amanda - 12/29/99 02:04:50 My Email:jacko1301@hotmail.com Your Illness: LPHS, Basement membrane thinning disease

Comments: My name is Jackie, my daughter Amanda is 15 and has LPHS and Basement thinning membrane disease. She started urinating visable blood in June 99. She is in pain everyday, some days worse than others. The pain started in January 99. They thought is was bein caused by an ovarian cyst, they removed it and the pain was still there. Then they thought maybe IBS and put her on meds for that,still pain, now she has had a bioposy, cat scans, MRI, scopes, we have been to Mayo twice. She takes ALtram for pain, blood ressure meds, anti-depressant used in lower dosed for cronic pain (mayo) and today she had her 2nd injection into her back (a type of spinal block) and is on an anti-seizure med (started today) also used for cronic pain. She has missed alot of school but is keeping up. Any advise? Thanks

Lise Blanchette - 12/14/99 02:42:58 My Email:tournord@ntl.symptico.ca Your Illness: loin pain hematuria

Comments: I have been sick since February 1998. I have recently been diagnosed with loin pain hematuria. I would like to chat with people with the same disease.

Don Winfield - 11/12/99 17:02:49 My Email:dwinfield@worldchat.com Your Illness: Hematuria Loin Pain Syndrome/ Renal Colic/Kidney Stones

Comments: Hi there... I have been ill since 1986 - almost 14 years ago initial diagnosis - renal colic - kidney stones - have passed over 3091 stones in almost 14 years - also have hematuria loin pain syndrome - diagnosied 1989 - had auto-transplant of left kidney had to be r moved 1 year later due to dying. Presently experiencing severe gut wrenching nausiating excruciating pain despite being on a morphine pain pump. Problem - SQ tissues have become to the point where there is so much scar tissue that morphine is not totally being absorbed when administered Q via butterfly via pain pump. Pain has been excruciating even when not passing stones which led to the HLPS diagnosis - always have hematuria in urine either microscopic or visable - sometimes small clots that can hurt just as much as a stone... Glad to see info on the net about HLPS - when I had the auto-transplant in 1990 there was very little info around about HLPS - now at least it seems to be being recognized as a 'real disease' that causes 'real pain' - when I first started this illness...i took a great deal of research and a Doc that believed in my and my pain to find the HLPS diagnosis... The docs are at this point trying to decide if I would be in better pain control if the morphine was administered via a portacath directly into the blood stream...problem is we here in Canada are about 2 years behind the USA and 4 years Behind Europe when it comes to pain management and to get anything moving is like moving the Eifle Tower... Take care everyone - hang in there! Later --=[Don]=--

Elisabeth - 10/24/99 13:42:03 My Email:Herve.Cornette@wanadoo.fr Your Illness: Loin Pain Hematuria Syndrom

Comments: I HAVE BEEN DIAGNOSED LPHS A MONTH AGO.MY PRESENT TREATEMENT IS BASED ON ASPIRIN (0.160 mg) and high blood pressure pills plus pain killers when the attacks of pain are severe.I would like to know more about the desease and how to cure it or manage to live with it since it seems to exist very few cases in France.Elisabeth

Tasha Warenski - 10/02/99 08:27:13 My Email:twarenski@hotmail.com Your Illness: LPHS

Comments: I have been recently diagnosed with LPHS. If there is anything anyone can tell me about this diagnosis and how they have gone about things I would appreciate it. I am 26 yrs old. Thank You

Nancy - 08/10/99 04:24:56 My Email:NKF45@aol.com Your Illness: LPHS & Lupus-Like Illness

Comments: I was diagnosed with LPHS in Feb. '99. I've had blood in my urine for almost 10 years. Ohio State University Hospital found it with transjugular biopsies, normal route could not be done because kidneys were too small. At the present time, I'm on narcotic ills, but they're talking about a implantable morphine pump. Also, mentioned in June was some aortic block. Need help...

Kelly - 06/21/99 03:37:41 My URL:http://www.cguru.com My Email:Kelly@cguru.com Your Illness: CFIDS

Comments: Hello, I have CFIDS and other ailments that have caused me to go on disability. I am 28 and have been consistently ill now for about 4 years. I have had blood in my urine since I was 5 years old and they tell me it is chronic because they did many tests a d everything comes back normal. I have alot of gynecological and urological problems. I was diagnosed with interstitial cystitis and I am on my way back to another doc tomorrow to see if any new things have developed because I definitely thing something e se is wrong. I have a lot of pain and discomfort. The recent doctor again was concerned with the amount of blood in my urine and this time I wanted to seek information rather than just dismiss it as all the doctors have. I am not even sure if this is a pr blem and if it is the discomfort that I am dealing with but I do not think it is okay to say that it is there and can be serious but we have no substantial evidence so we have to send you on your way. With the experience I have with doctors I cannot and w ll not do that, I have lost most of my respect for doctors! If anyone could explain symtoms of hematuria or their experiences with it I would be very grateful. Thanks

Terrie Shakir - 06/06/99 17:54:05 My Email:torill2@Juno.com Your Illness: Loin Pain Hematuria Syndrome

Comments: I have had LPHS for 20 years now, started in New Jersey. I have Kidney Auto-transplant, a flipped kidney. Still suffering

Terrie Sakir - 06/06/99 17:53:39 My Email:torill2@Juno.com Your Illness: Loin Pain Hematuria Syndrome

Comments: I have had LPHS for 20 years now, started in New Jersey. I have Kidney Auto-transplant, a flipped kidney. Still suffering

Terrie Sakir - 06/06/99 17:53:25 My Email:torill2@Juno.com Your Illness: Loin Pain Hematuria Syndrome

Comments: I have had LPHS for 20 years now, started in New Jersey. I have Kidney Auto-transplant, a flipped kidney. Still suffering

Liam Robert - 05/03/99 16:41:49 My Email:liam.robert@uk.sglcarbon.de Your Illness: Loin Hematuria Syndrome

Comments: Hi my name is Liam and come from Scotland. This is quite a shock to see so many people with the same diagnosis as me. I have only recently been diagnosed with this condition and know very little about it. I would appreciate any information anybody has on his condition. This whole ordeal started late September of 1996. Were l first started having pain, sometimes quite severe in my side. I just simply put it down to stress, as l was putting in a lot of hours at work. So l thought l would take a weeks holida and take it easy. This course of action didn't do a thing for me. I just noticed that the pain was reoccurring more frequently and becoming more severe. Until one day after playing a game of badminton, l noticed that l was passing a large amount of blood in my urine. As you all probably know, l was scared senseless. I went straight to the doctors and the first thing they suggested was kidney stones. As you all know, there were no stones. There was also no explanation to why l was having so much pain and b ood in urine. Also started getting reoccurring Kidney and Urine infections. My Doctor then referred me to a Specialist, who conducted a number of tests all with the same outcome, non-conclusive. 8 months ago l was officially diagnosed having Loin Hematuri Syndrome. The only problem is that l don't know anything about it!!! I have just been informed that my sister has got Kidney problems too. The medical professions are treating this as suspected kidney stones. My sister is detailing the same symptoms l had in the beginning. I hope to god, that it is kidney stones. Right l think l have gone on long enough. Once again l would appreciate any information anybody has on this condition. Thanks for listening.

- 03/16/99 02:57:46

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ANGIE - 01/25/99 23:28:09 My Email:motherfletcher@mindspring.com Your Illness: EHLERS-DANLOS SYNDROME

Comments: I AM 27 AND HAVE EHLERS-DANLOS SYNDROME TYPE VI. I HAVE KNOW ABOUT THE CONDITION ALL MY LIFE BUT ONLY KNEW ABOUT IT IN DETAIL FOR ABOUT 5 YEARS. I HAVE HAD AN ARTERY TO RUPTURE AND I HAVE HAD 12 OPERATIONS ON MY BACK FOR SEVERE SCOLIOSIS. I AM A VERY HEAVY BLEEDER AND THE OPERATIONS WERE VERY RISKY.

BRIAN TUDOR - 01/10/99 03:42:34 My Email:tudors@hunterlink.net.au Your Illness: LOIN PAIN WITH HEMATURIA SYNDROME

Comments: We have a son aged 23 yrs who was diagnosed with loin pain with hematuria syndrome 5 yrs ago. He suffers very severe attacks which can last up to 24hrs and can occur every few days, weekly, or monthly. Does anyone know of any treatment apart from autotransplantation and surgical denervation? Any suggestions for pain relief as Doctors are having problems controlling it. Are there any sufferers of LPHS out there that are the children of Vietnam War Veterans or children of mothers bearing children late in life? We also wonder whether there is any chance of it having a hereditary asis. Here in Australia there is talk of a trial of the drug capsaicin in treating LPHS. Any news anywhere on this? The severe pain that our son suffers is devastating, heartbreaking and cruel to all concerned. Any comments would be very much appreciated. Brian and Shirley

Mandy - 12/17/98 05:47:49 My Email:MG_Simmons@msn.com Your Illness: Ehlers-Danlos

Comments: I stumbled across this web site looking for Ehlers-Danlos info. I have had blood in my urine for which they could not find a cause - no stones, infection etc. I had other bleeding problems too. Coagulation studies tested normal. Evidently that happens ith EDS. I don't know if I had the condition described on this web site but I will let you know what helped me. I changed my diet and the bleeding problems stopped. I cut back on foods with salicylates (most fruits, esp berries and citrus fruits, vinegar some nuts and veggies), increased my vitamin K - essential for blood clotting - ate more fresh leafy green vegetables (freezing and irradiation destroys vitamin k - I think cooking is ok, ate yogurt or took acidolphilous tablets regularly - especially aft r taking antibiotics (the "good bacteria in your stomach is needed to synthezise vitamin k, and cut back on foods/drugs with any anti-coagulant properties - aspirin, Tylenol, Advil, etc., garlic. If you are on medication to thin your blood you may need to adjust your dosage if you change your vitamin K intake. I am not a medical professional a d I don't know if these changes will help the people on this web site, but I did stop testing positive for blood in my urine after I made these changes. Please email me if you want more info or see "Prescription for Nutritional Healing" by James Balch - c apters on nosebleeds and hemophilia. (I have no vested interest in this book - it just helped me a lot).

Linda and Rachel - 11/25/98 14:21:25 My Email:Linda.Luebke@UnitedHealth.org Your Illness: Loin Pain Hematuria Syndrome

Comments: My daughter Rachel is 15 years old and was diagnosed 4 years ago with LPHS. We are looking for any information or support we can. Please write.

Christine Perrigoue - 11/20/98 05:49:50 My Email:bperrigoue@aol.com Your Illness: LPHS

Comments: As I sufferer of LPHS I am frustrated at the lack of available treatments for this disorder. After many conversations with other patients I learned they shared my frustrations. I have stared the LPHS Patient Research Project the purpose of which is to gather patient data so that it can be shared with physicians interested in researching the cause of LPHS. To date, I have located 30 people with LPHS and 17 have agreed to partici ate in the survey. Many of them have already posted at this guestbook. I am seeking any LPHS patient who would be interested in participating in this project. It only involves completing a patient survey form and sending it back to me. Myself and another LPHS patient having been working to contact nephrologists who would m y be interested in this project. To date, we have two doctors who are very interested in having access to a large enought LPHS patient population to do research. If you are interested in receiving more information regarding this project, please contact me at bperrigoue@aol.com. Unless LPHS patients take a proactive role in asking for research we will be forever relegated to pain management as the only option for reatment. You may also contact patients on this guestbook and ask them about the project as most have already agreed to participate. Christine Perrigoue

peter carpenter - 11/18/98 01:49:33 My Email:petangerie@earthlink.net Your Illness: loin pain hematuria

Comments: my mother has this ,she has had it for 16 years ,she lives in australia ...she has had 6 operations and no luck at all to help it ..please send me any info or talk with other members...tha

Sandi - 11/13/98 02:17:46 My Email:gsphill@inwave.com Your Illness: LPHS

Comments: I have had LPHS for 5 years -- but was just diagnosed last year (97) at Univ. Hosp. in Wisconsin. I have been to Mayo Clinic for one week of tests, only to be told that I should consider acupuncture, pain mgmt., or see a psychologist.

Cynthia Olsen - 11/03/98 01:25:21 My Email:dmo_eve6_showoff@hotmail.com Your Illness: loin pain hematuria syndrome

Comments: I have lost one kidney to this disease already.I would like more information if you could send it to my email address I would appreciate it very much. Once again my email address is: dmo_eve6_showoff@hatmail.com Thank you very much!

Tasha Warenski - 10/26/98 23:35:14 My Email:twarenski@enol.com Your Illness: LPHS

Comments: Please tell me any informations you have. I have been recently diagnosed with this disease. Thank you.

J.S. - 10/22/98 04:02:26 My Email:peanutmybaby@worldnet.att.net Your Illness: loin pain hematuria

Comments: Just received the diagnosis today. It was made as an adjunct to a primary diagnosis of IgA Neph. As a result, the feeling is that the pain may be more manageable if the IgA can be managed. Dr. D. Makoff w/ Cedars-Sinai Hospital in L.A.made the diagnosi and has some "sound" opinions about the disorder. Any feedback? Any treatment success stories?

nicole mulcahy - 09/05/98 19:13:17 My Email:nicole.mulcahy@gte.net Your Illness: loin pain hematuria syndrome

Comments: hi, my name is nicole. i am 18 years old and have had right flank pain for 1.5 years. after a year of testing, hospitalization, and seeing doctors, they finally diagnosed me with LPHS. i was thrilled, but then i wasn't. my doctors do not have a lot of information on this at all and they don't know my future outcome yet. they put me on blood pressure medicine to open up my veins and to keep the blood flowing to relieve pain. it seems to help a little, so they just doubled my dosage. i am at college a d unsure on what to do about this. everyone kept saying that i shouldn't go because i am 6 hours away. but if my doctors don't know anything about this disease, why can't i enjoy my life as much as possible for the time being? they diagnosed me through a kidney biopsy at St. Joes in Elgin, IL but sent the sample to Loyola. i missed a whole quarter of school (my senior year) and had to make up all of my work in 2 weeks. well, i did it, but i wore myself down. that summer i developed mono. my doctor hinks i also have lupus. well, please help me in anyway that you can. i would definitely appreciate it. Nicole Mulcahy Thank you for all of your help.

William Bautz - 09/05/98 18:55:39 My Email:judyb@pcom.net Your Illness: Loin Pain Hematuria Syndrome

Comments:

PATRICIA SOLDAVINI - 07/20/98 00:41:11 My Email:acc85a@mediaone.net Your Illness: Uremitting heavy pain lower back quadrant

Comments: Tried everything. Have Soliosis ans fused vertibre but think it unrelated to the area of pain. Doctors have no idea what it is. Have had hip replaced, pinched nerve studies, kidney evaluation, acupuncture, herbs, pain clinic, morphine, pain kil ers doctors will not now reorder, 'magic' teas, magnetic belts, electric stimuli, magnetic resonance imaging, cat scans, dye tracing, special orthopedicd mattress elevating devices, physical trainer, massage, deep tissue neuromuscular treatments special exercises, chiropractics, spine rolling wheels, more I'm sure. The pain is constant and awful. Pat

Christine Perrigoue - 07/09/98 02:02:09 My Email:bperrigoue@aol.com Your Illness: Loin Pain Hematuria Syndrome

Comments: After a year and a half of unrenlenting right flank and abdominal pain I finally have a diagnosis, LPHS. It is hard to believe that I have a rare disease which affects such a small number of people. This must be the most obscure disease there is. Altho gh there is a sense of relief at a name for this thing - it is of little comfort when there isn't a damn thing they can do about it. I have been taking it one day at time and trying not to worry about what the next day will bring. However, right now I a struggling with the decision I have dreaded for so long - disability. I have a job that I love but it is clear that my body won't let me do what I want it to anymore and my employer (no matter how sympathetic) is not going to continue to put up with my bsences much longer. I have come to terms with the fact that my life, as I knew it, will never be the same, but giving up work feels like the biggest hurdle of them all. Anyone else out there who has struggled with this? I'm afraid the disability compa y will have a hard time believing LPHS is even a bona fide disease. Okay, I've rambled long enough. I would love to hear from anyone with LPHS to compare stories.

ANGELA SMALLWOOD - 06/30/98 22:50:13 Your Illness: SCLERODERMA

Comments: REFERENCE HEALING, GET TOGETHER'S, ABOUT THE NEW TREATMENT FOR RELIEF OF TIGHTNESS IN THE YOUNGER AGE GROUPS OF 30ISH'ERS, PEN-PALS. THIS IS THE BASIC AREAS OF CONCERN. PO BX 122 WOODLAND HILLS, 91365 C/O GROOMER.

Daniel Vance - 06/23/98 17:42:42 Your Illness: Thick Glomerular Basement Membrane Disease (LPH Syndrome)

Comments: Thank you for providing this area to voice my heart. I have been suffering from LPH for 3.5 years now. I used to be active in free climbing and the martial arts; all of this came to a quick end. i have found it hard to retain a job doe to the unrelenti g pain I endure. I have read many comments from many of you and I need to tell you your not alone; I too, at first, thought I was crazy. To finally put a name to a disease which for over 2.5 years went unnamed I felt such a feeling of relief. But when hey told me what the outcome of it was, well let's just say I had to contain my tears. At present, my kidneys are functioning 67% and I have to see the doctor at least once a week to control the pain. Please feel free to write me. It would help to talk to someone with the same condition. Daniel A. Vance 839 1/2 second ave. Gallipolis, OH 45631 Thank you. And GOD bless each and every one of you!

Nancy Fischer - 06/17/98 22:26:15 My Email:FISCH@aol.com Your Illness: loin pain hematuria syndrome

Comments: I have been going through surgeries and tests trying to controll and find out what is causing the pain in my right flank. They even went as far as to raise my kidney to see if that would help. I appreciate all that my doctors have done for me. At least they never said "Go see a shrink" they have been almost as frustrated as me. However I am the one living with the constant and horrible pain. I use to ride horses everyday and play with my kids (and husband)it has been so long for any of that it seems ust like a memory. I would do anything to get my life back. I will be heading to the Mayo Clinic if I get no results from the nerve blocks tomorrow, and if nothing shows up on my MRI. It was such a relief to run into this page while looking for any inf rmation I could find regarding kidney and flank pain. When I read this information, I couldn't believe my eyes. I immediately called the phone number for the nurse who started this Home page. However, I cannot find the phone number again. So if anyone out there is reading this and has her number could you please E-Mail it to me. THANK YOU Nancy Fischer

alison sehee - 05/30/98 01:29:08 My Email:seheer@ugsolutions.com Your Illness: CEP Congenital erythropoieticporphyria

Comments: Alison was born on july 1,1997 and was diagnosed at 16 weeks. If any one can shed some light or give us some ideas we would really appreciate it. thanks Amanda and Bob parents

test - 05/21/98 06:57:21 My Email:test Your Illness: html-itis

Comments: Testing! Hello! Can you hear me in the back??